A very special little girl in our lives, Quinn, has recently been diagnosed with Idiopathic Pulmonary Hypertension (IPH) a rare condition, particularly so amongst children with few young patients in the UK being diagnosed.

IPH is a very serious condition caused by high blood pressure in the vessels that carry blood from the heart to the lungs. The condition damages the right side of the heart, causing it to have to continually work harder and as a result gradually become weaker. This significantly affects quality of life over time and ultimately leads to heart failure. As it stands IPH has no cure and is a life-limiting condition.

Quinn is just 10 years old, everyone who has her as part of their life knows she is just a ray of light and this diagnosis has been truly devastating to those of us lucky enough to love her. Quinn was born extremely prematurely, at just 25 weeks and as a result has already fought so much in her little life, our Mightiest of Quinns.

Since her diagnosis in January of this year she has spent many weeks in hospital, receiving round the clock care from brilliant teams in both Bristol Children’s Hospital and Great Ormond Street, under whose care she will now be, on an outpatient basis. In March Quinn underwent surgery to have a permanent Hickman line fitted in order to provide her round the clock medication to help her day to day. Thankfully she was able to return home following this surgery but has done so with a number of additional care needs to ensure she is able to balance getting the best possible effects from her medication for as long as is possible, giving her body, and in particular her heart as much relief and rest as possible and most important of all enjoying as much of what a 10 year old should be getting up to as she can. Now, more than ever, The Cattermole family are focusing on making as many wonderful memories as is possible and filling Quinn, and her sister Joni’s, lives with as much joy and magic as they can.

Pulmonary Hypertension Association UK (PHA UK) are the only charity in the UK dedicated to supporting people affected by this rare disease and work tirelessly to raise the profile of the condition and ensure equity of access to treatments and services and provide support for patients and those around them. They support people affected by PH to enjoy a better quality of life; raise awareness of PH to encourage understanding and earlier diagnosis, carry out and assist with research to understand the needs of people affected by the disease and improve the way it is both treated and managed. They provide support for NHS specialist treatment centres, and those working within the service and advocate for patient needs – providing a platform for their voice to be heard loud and clear

PHA UK are committed to supporting the PH community and raising awareness of this serious condition – in the hope of one day, finding a cure.

We want to do all we can to support this organisation, in particular research in to alternative medications that can provide more effective and longer term support for Quinn and the PH community and do anything we can to edge closer to finding a cure.

So, we have decided to take on a challenge fit for our mightiest of girls and eight of us will be playing the part of Knights taking to our brave steeds (in this case bicycles!) cycling 55 miles between 8 castles across Pembrokeshire on Saturday the 3rd of August to raise funds for and awareness of Pulmonary Hypertension (PH), aiding vital research and providing equipment to make Quinn’s life as accessible and fun filled as a 10 year olds should be.

We will start off our quest at Pembroke Castle, then on to Carew Castle, Manorbier Castle, Tenby Castle, Narberth Castle, Llawhaden Castle, Wiston Castle, Haverfordwest Castle and circling back to Pembroke Castle.

It will be a challenge but if we can raise any awareness and any funds to help support research into PH and how to tackle it then we are determined to do it. Each donation will mean so much and will go towards vital work supporting the PH community and working towards finding a cure so any pennies you can spare would mean the world to us.

A huge thank you

Jamie, James, Joel, Sam, Craig, Mark, Chris & Big D

#spinforquinn